Gender identity collection at an NCI-designated comprehensive cancer center.
287 Background: Consistent reporting of gender identity data is necessary for quality cancer care. In 2023, New Jersey (NJ) mandated SOGI data collection for all patients seen in the state. The Sidney Kimmel Comprehensive Cancer Center (SKCCC) has clinical sites in both NJ and Pennsylvania (PA). We previously reported on improvements in data collection in the NJ locations since the months after the policy change prompted data gathering education at the NJ clinical sites. We anticipated improvements across the health system to occur over time. In this study, we report on gender identity data collection between SKCCC PA (Center City/CC) and SKCCC NJ to assess policy change impact approximately 2 years post implementation. Methods: All persons with a cancer diagnosis with clinical visits at SKCCC CC and NJ from January 1 to December 31, 2022 were included as the baseline. All persons with a cancer diagnosis and a clinical visit at the same locations between August 1, 2023 through present were included as the post-policy measure. The data are presented in intervals to assess change over time. Data were abstracted from the electronic medical record. Missing data (not asked) was separated from not disclosed. Results: Of the 19,594 persons with clinical visits at SKCCC CC at baseline, 3168 identified as women, 1774 identified as men, 6 as non-binary, 134 (0.7%) chose not to disclose their gender identity, and 14,512 (74%) had missing data. Of the 5,278 persons with clinical visits in SKCCC NJ at baseline, 2278 identified as women, 1012 identified as men, 3 as non-binary, 152 (2.9%) chose not to disclose their gender identity, and 1,826 (35%) had missing data. After the policy change for NJ, less missing data were observed for both sites with a marked improvement for NJ. For CC, missing data were noted in the immediate months after the policy change at 66%; for 2024-60.4%, for 2025 to date-60.9%. For NJ, missing data were noted in the immediate months after the policy change at 9.4%%; for 2024 10.3%, for 2025 to date 5.6%. Conclusions: Although policy change in NJ improved gender identity data collection in both NJ and PA, significant and ongoing improvements were noted in NJ where specific education for data gathering had been implemented. When offered the opportunity to share gender identity, less than 5% decline disclosure. Gender identity data collection can be improved over time. Gender identity by location and over time. Time Period 2022 (Baseline) Aug 1 – Dec 31, 2023 2024 Jan 1 – May 31, 2025 Location Center City (CC) New Jersey (NJ) Center City (CC) New Jersey (NJ) Center City (CC) New Jersey (NJ) Center City (CC) New Jersey (NJ) Women 3,168 2,278 2,474 2,295 4,940 3,882 3,531 2,945 Men 1,774 1,012 1,687 1,165 3,349 2,035 2,422 1,551 Non-binary 3 3 10 1 21 9 16 8 Chose not to disclose 134 152 78 139 190 255 164 228 Missing data 14,512 (74%) 1,826 (35%) 8,259 (65.9%) 373 (9.4%) 13,183 (60.8%) 710 (10.3%) 9,509 (60.7%) 282 (5.6%)
Authors
- Olivia Trachtenberg
- Nikita Nikita (ORCID: https://orcid.org/0000-0002-6672-9772)
- Julia Witkowski
- AnaMaría López
Institutions
- Thomas Jefferson University (US)
- Sidney Kimmel Cancer Center (US)
Publication Details
- Journal
- JCO Oncology Practice
- Published
- 2025-10-01
- DOI
- https://doi.org/10.1200/op.2025.21.10_suppl.287
- Primary Topic
- Interprofessional Education and Collaboration
- Type
- article
- Field-Weighted Citation Impact
- 0.00